"Impossible," I thought. But after 8 years, I brought mom home from a nursing home. I learned lessons that made me a better caregiver.
Now that she has been home for two years, I know I made the right choice.
Many caregivers doubt their abilities and think that a nursing home is the only option. I want to share the most important lessons I learned that allowed me to make the leap and bring mom home.
Mom's Limitations Aren't the Problem
My mom will never walk again. She hasn’t walked since 2008, when she had a stroke. For years I thought that the day she walked again would be the day she was ready to come home. I thought that her disabilities were the problem, and that once they were “fixed” everything would be better.
When I was in law school, I hoped to learn how to get my mom services like physical therapy so she could learn how to walk again. Instead, I learned that people can live in their communities with complex disabilities. When I stopped seeing her limitation as the enemy, I saw that my mom deserved to live a rich and complete life just as she was.
People live with disabilities every day. Disability rights activists have fought for decades for inclusion in their communities. Ed Roberts was an early pioneer of the independent living movement. He was the first severely disabled student to attend the University of California at Berkeley, and he advocated for the rights of people with disabilities to live in their communities and make independent choices. His work inspired me to focus on bringing my mom home instead of focusing on her learning to walk again.
Caregiving is Hard, and Help is Available
Even if you’ve never been a caregiver, you’ve heard that caregiving is exhausting and time-consuming. If I thought I would have to do it alone, I would not have been able to bring my mom home. I learned that support is available for people with disabilities living at home.
People with disabilities qualify for Medicare, even if they are not 65. Medicare will pay for a nursing home, but only for a short period of time. Medicare does not pay for in-home care. So the options to pay for in-home care are: do it all yourself, get part or full-time help from a caregiving agency, or (if you qualify as low-income) receive in-home community care from Medicaid.
Reach out to your local elder law attorney, because even if you think you don't currently qualify for Medicare or Medicaid, there are specific guidelines and exemptions in each state. Elder law attorneys are invaluable. Since laws vary by state, and according to your family's situation, you'll benefit from personalized advice.
I Don't Need to Be a Nurse to Provide Excellent Care
I’m not a medical professional. Studying health law and public health taught me nothing about wound care or managing diabetes. I had a lot to learn, but I knew I was up to the task.
My mom is a lot healthier now than she was when she lived in facilities. She's lost over 40 pounds through diet and exercise, which improved her blood pressure and diabetes. She needs less insulin now, goes to the hospital less often, and her chronic pain has improved.
Instead of Caring for a Group, I Gave Personalized Care
This is because it’s easy for everyone on her care team to stay updated on her health and quickly respond to her needs. We prepare meals following her doctors' advice...we’re not cooking for a dining hall full of residents. Since we don’t have many residents to care for at once, we have time to help my mom with her daily stretches and exercises.
I met many wonderful employees in the facilities where my mom lived. However, it was difficult for them to manage her medical conditions when they had other residents to care for. My mom still sees her doctors often, and occasionally a nurse will visit her at home to check on her. It’s not necessary for her to live in a facility with a nurse on staff at all times.
Things Won’t Be Perfect – And That’s Okay
I truly enjoy sharing a home with my mom. Some days are still hard – like when she wakes me up at 3 am because she had a nightmare, or when her pain is bad and I can’t help her feel better. Sometimes I’m impatient, and sometimes she is demanding.
My wife and I lived alone for 6 years before my mom moved in with us. Occasionally, we miss that simpler time. Most young couples don’t imagine themselves as caregivers when they picture their future. We were ready to bring mom home and went in with eyes wide open. We prepared as best we could, then readied ourselves for the unexpected.
Relationships Aren't Perfect, Beware of Burnout
I know that some caregivers don’t have the best relationships with the people they’re caring for. Personalities sometimes clash, and some relationships are very unhealthy. Some conflict is normal. But as a caregiver, you need to understand your limits and protect yourself from burnout.
Unfortunately, some caregiving relationships are negative - this is possible in both directions. I would never encourage someone to stay in an abusive situation. That's when in-home caregiving is not appropriate.
These are Deeply Personal Decisions
The choices we make as caregivers and as aging adults are deeply personal, and it’s not my place to make those decisions for others. For my family, moving my mom home was the right choice. I'm grateful that I learned that disability isn’t the problem, support is available, and I'm capable of providing excellent care. If you're a caregiver considering the switch from a facility, I hope that these lessons have empowered you to understand your options.